Saturday, October 17, 2009

Choosing the Right MS Doctor

I regularly receive inquiries from newly diagnosed patients asking for recommendations on "the best MS doctor". Often, the request comes in the form of the question, "Can please you tell who is the best MS neurologist in the world?" I'm afraid my answer often disappoints those reaching out to me, because the truth of the matter is that there is not any one doctor out there who can claim the title of "World's Best MS Neurologist".

Certainly, competency levels can vary from physician to physician, and it's important to choose a doctor who knows what they're doing (and there are some who don't). That said, all MS neurologists draw from a standard body of knowledge, the sum total of all of the MS research that's been done up to this point. MS is an incredibly complex disease, and despite decades of research, there is little real understanding of the mechanisms underlying the MS disease process. There are theories, but little in the way of proven fact.

Since so much about MS remains unknown, a good physician will be open-minded, and not be locked into traditional medical dogma. Recent research has overturned many long-held assumptions about MS, and much has yet to be discovered. A closed minded physician who dismisses new ideas out of hand should be of no use to you, but you do want a doctor who maintains a healthy skepticism of all of the "theories du jour" that tend to whip around the Internet. Your doctor should be willing to listen, but also willing to cogently explain the reasons behind the skepticism that, as an educated patient, you will almost undoubtedly run into.

Unfortunately, there is no MS Wizard out there, who carries within his brain unique knowledge and a secret formula for defeating MS. There are many brilliant doctors practicing MS neurology, but they all have access to the same bag of tools, which includes the same diagnostic tests and the same menu of approved MS treatments. Some are more aggressive than others, and some more willing to try "off label" treatments, none of which at this point has proven to be a miraculous elixir. It's important to choose a doctor whose level of aggressiveness matches your own. All doctors have their hands tied by health insurance companies, which routinely reject requests to pay for experimental treatments because they haven't been approved by the FDA specifically for Multiple Sclerosis.

I've personally been examined by some of the top MS neurologists in the United States, veritable celebrities in the field, almost all of whom I've found to be deeply intelligent, intensely thoughtful, and very compassionate human beings, in addition to being terrific clinicians and researchers. None of them has been able to solve the riddle of my disease, or been able to suggest treatments that the others hadn't already mentioned. Currently, there are only a limited number of treatment options out there, and for those of us with progressive disease, those choices are even fewer. The best of the best physicians try to think outside the box, but even there, answers are hard to come by.

When choosing a doctor, it's very important that MS patients see an MS specialist. The disease is too complex, and the research being done too dynamic, to leave oneself in the hands of a general neurologist. All of the top MS physicians I've seen are passionate about their work, nearly to the point of obsession. These are doctors who have never cured any of their patients. They've been able to help alleviate some of their patients’ symptoms and suffering, but none have ever been able to declare a patient free of disease. I imagine this is what drives the frustration that I've seen in the eyes of the best of these doctors.

Obviously, competency is a primary factor in choosing a doctor. Equally important, though, is finding a physician who makes you feel both confident with your treatment choices, and comfortable with the doctor themselves as a human being. They don't need to be your best friend, but neither should they be holier than thou jackasses. When choosing an MS neurologist, you are choosing someone with whom you'll be maintaining a vital long-term relationship. MS is a chronic illness, and until that momentous day that a cure is found (don't hold your breath), MS patients will be dealing with their disease, and their MS specialists, for the rest of their lives. Your MS doctor must be someone you can trust and rely on, and who accepts you as a partner in your fight against the disease.

Big egos are par for the course with top doctors, it's part of what drives them to be top doctors. But your relationship with your physician must be a conversation, not a lecture. As a patient with MS, it's your obligation to educate yourself about the disease to the very best of your ability, and to take an active role in the ongoing treatment of your illness. The doctor patient relationship should be one of mentor and student, not that of master and serf.

Also of great importance is the efficiency and demeanor of the staff of your doctor’s office. Most of the phone calls you make to your MS clinic will not be handled directly by your physician, but by his administrative staff, nurses, and associate physicians. Nothing is more maddening and frustrating than an unreturned phone call when you develop a troubling new symptom, need a prescription refill, or otherwise have a question regarding your condition. Such delays are rude and dangerous, and should simply not be tolerated. Certainly, in a busy neurologist's office, messages can sometimes fall through the cracks, but a repeated pattern of such behavior is reason enough to change doctors. Remember, your doctor and his staff work for you, not the other way around.

Choosing the right doctor is vitally important, but the quest to find "the best MS doctor in the world" is, sadly, a fool’s errand. I know this from first-hand experience. If you are dissatisfied with the level of treatment you are getting, then by all means seek out a new doctor. If you are uncomfortable with your diagnosis, you owe it to yourself to seek out a second, and even a third, opinion. Dispense with any notions, though, that you will find some magical MS alchemist, who will somehow conjure up a cure for you.

Keep in mind, too, that even the best medical schools can turn out less than stellar doctors. Remember, you are not choosing a fancy degree hanging on a wall, but a human being with whom you will likely be spending many years, not to mention many dollars. Choose well...

11 comments:

Hi Marc,Thanks for your good post.I see no neuros now. Better for my well being not to. The neuros I saw were from two of Amsterdam's biggest hospitals, the OLVG (Onze Lieven Vrouwen Gasthuis) and a well known teaching hospital; the VUMC (Vrije Universiteits Medisch Centrum, Amsterdam).The second opinion neuro was from Dr. Professor Polman,from the VUMC, one of the leading world experts on MS.It took ages and then he told me that it was clear that I had abit of MS, this when I was already fulltime in a wheelchair, a year after diagnosis.Neither of these had a prognosis or treatment plan for me.Neither felt able to even give an opinion.I stopped going after one from the OLVG asked me how come I managed to get so quickly into a wheelchair.My GP is more helpful.I use baclofen for spasms and self medicate with thc and have a good diet and exercise every day.I do arm exercises daily and use a motomed for legs, get one they are very good.http://www.motomed.com/themen_01_gb/geraete_01/motomed_viva2_01/fset_motomed_viva2_01.htmlOn the 29 I can start to sit up again and hope that my new winter wheelchair jacket and bag for my legs will keep me warm so I can enjoy riding round town again.Love,Herradps just been round Central Park, again, which is a great thing to do on a Sunday afternoonThanks for the fun ride.

Great points and I think my family is coming to terms with this approach....

One thing I wonder about is this: I read your profile and noticed that you are 43 years old and were diagnosesed essentially in your mid 30's (if my math is correct) and now you are in a wheelchair. I'm really taken aback by that. I had always thought (and possibly wrong) that if a person gets MS later in life (i.e. not in their teens or in their 20's) then the disease rarely becomes diblitating. Isn't that correct? have you heard that too? Thanks

I think Aaron must be young, to think us old people, late 30 (Marc at Dx) is NOT old. Myself DXed at 46, in a chair at 53, On the cusp of old but..... Can I get my Target senior discount (honestly don't know )but dx at 46 did not make me feel ancient. Am an old motha , I'm almost 54, kids are 17. MS or not, teens are tiring. 30's are a "remember when" time to me. Marc, as I got married, you were just a boy in your teens. Marc, I could have babysat you long ago. YIKES! My old teen students have entered their 30s now. To DD of 17, Mom is OLD. (But looks good for her age, I like to think she thinks)kicker

Aron-I suffer from PPMS, a less common and more aggressive form of the disease that tends to strike older people, and males as often as females. I'll refer you to an early post on this blog, "MS for Dummies". You can find it here:

Thanks for the older post. I just finished reading it. My sister was diagnosed with RRMS. We were "encouraged" (if that's the right word") because we thought that was the mildest form and she could end up being "stable" for her entire life. What is interesting in reading your blog is that it points out that EVENTUALLY even with those that suffer from RRMS, the majority will suffer from a permanent disability. This sucks. I really hate this. I hope that a cure can be found... UPDATE: My sis will be going to Ottawa to see Dr. Freedman. Thank you very much for that referral. We reviewed his CV. Holy mackeral: 27 pages!! The great thing is he's a specialist in this. Presently she is seeing a neurologist who deals with a lot of MS patients but he's not a specialist. So...we're all looking forward to seeing Dr. Freedman in Ottawa. Very impressive achievements...will keep you posted....thanks again.

Wow, the comments. I am always a bit amazed at the ignorance still out there about MS. So much is unknown but what IS known us NOT known by many with MS! I think much is denial. Your post was great. The earlier or later you get MS the better the chance of disability(to most that means(OH GOD NO NOT A WHEELCHAIR!) The average age for MS DX is 30. With today's advances in DX I don't know how they have adjusted that. I was a typical MS DX age 33.(19yrs ago) Today, had I gone to Dr. sooner, age 29 would have revealed a text book MS DX. I used the "best" MS DR., used all the right drugs, exercised, best diet, still after 15 years in wheelchair. Very typical, completely expected. Start RR and slowly move to SPRR, using mobility aids as needed, perhaps some drugs for symptoms, and life goes on with a normal life expectancy minus a few years (falls, lack of sufficient lung use, muscle wasting, and so on; much potential for prevention exists)---and we live with MS and die with it. Perfect post. (I'm looking for that elusive good MS Dr. since my "best" left me 5 years ago. Not easy even in a big city like Seattle.)

I am late in commenting on the fact that I have MS. Just really wanted to say something about your topic of disability and age of DX...I have had symptoms since I was 12 was DX at 18. I am not in a wheelchair and am now 32. I think everyone has their own brand of MS and all deal with it's effects uniquely. I don't take any meds from a Dr. I tried but couldn't understand taking something with horrible side-effects that could potentially take my life for something a scientist cooked up in a lab...for something that they say can't be cured and they don't know how I even got this. It is painful in all aspects of the word.

Dear Anonymous: I'm wondering how you your doing now still not being on meds? I am also asking if anyone knows of the the best NMO doc in New York area? I want a 2nd opinion about my possible diagnosis as soon as possible. Thanks, Anonymous2

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...